Donor Families Say Tell All for Tissue Donation

New York, NY
October 6, 2000

The National Donor Family Council (NDFC) of the National Kidney Foundation (NKF) released two statements today in response to recent concerns raised about the tissue community and tissue donation. The NDFC is the largest representative voice for donor families in the country with over 8,000 members.

Tissue donation includes the donation of bone, eyes, skin, heart valves, veins and ligaments, which can be used in various ways, including dental reconstruction, treatment for burn victims, heart valve replacement, bone replacement after serious injury or disease, and sight restoration from corneal disease or injury. An estimated 750,000 bone and soft tissue transplants are performed every year.

The first statement, a Position Statement on Tissue Donation, recognizes and supports tissue donation as an end-of-life option for families and recognizes its life-enhancing capacity to help thousands who are awaiting tissue transplantation, but calls for the tissue community as a whole to be more sensitive to the needs of organ and tissue donor families. In addressing the financial side of the issue, the Council recognized that financial resources are an important factor in maintaining the quality of the services provided, but urged the industry to re-examine procedures for recovering, processing, storing and distributing tissue to minimize costs and maximize benefits to patients. The Council also took a strong position on the use of donated tissue, stating that it must be used in a way that promotes healing for people with the greatest need.

The Council urged professionals to refrain from referring to donated tissue as a “product” and recommended that all packaging for donated tissue include some acknowledgment that the package contains the gift of donated tissue. The Council encouraged the tissue community to work to raise awareness among funeral services professionals in order to strengthen their commitment to honor family wishes, and further advocated that all expenses incurred by the donor family that are directly associated with tissue donation, including any increased funeral charges, be paid for by the tissue community.

In the second statement, the Council called for a more uniform Informed Consent Policy for Tissue Donation. “We want the public and potential donor families to know that tissue donation is a good thing. But we also want to tell professionals in the tissue community that families should be given all the information they need and want to make an informed decision at the time of donation,” said Vicki Crosier, NDFC Chairperson and donor mom. “We also want families to know that, if they need additional information immediately after the donation or years later, professionals will help facilitate their questions and provide what information is available,” she added.

In its recommendations, the Council states that the informed consent of the donor family must include a voluntary decision based on full disclosure of the facts prior to the consent for donation.

Full disclosure to the donor family includes seven key elements: 1) an explanation of the tissue donation process; 2) information about what tissue can and/or will be recovered based on the medical suitability of the donor; 3) an explanation that tissue can be used or modified in various ways for transplantation in a life-saving capacity, transplantation in a life-enhancing capacity, and medical research or education; 4) the option to limit or restrict the use of the gift; 5) information about the likelihood that the donated tissue will be stored, how it will be stored, the duration of storage, and the possibility that the tissue may not be utilized; 6) the option to receive a copy of the completed consent form and written materials about tissue donation; and 7) the option to receive further information and acknowledgment of their gifts.

Both statements were unanimously approved by the National Donor Family Council Executive Committee and the National Kidney Foundation Board of Directors.

The NDFC is working on several other initiatives relating to tissue donation, including assisting the U.S. Department of Health and Human Services, Office of the Inspector General, in providing access to donor families to share their experiences and perspectives on informed consent and tissue donation.

In addition, in a separate study held in collaboration with Case Western Reserve University, the Council’s 8,000 donor family members were asked to participate in a survey to determine the families’ knowledge of the use of tissues when they decided to donate, as well as their general attitudes about a wide range of issues related to tissue donation. Final analysis of the study is pending.

“Often, professionals speak on behalf of families and implement policies and procedures based only on professional viewpoints,” said Crosier. “The National Donor Family Council has the opportunity, through its membership, to ask families who have already gone through the experience to let us know what information they received, and more importantly, what information they would have wanted— not only at the time of donation, but afterward. If we want to empower families to make a decision about organ and tissue donation, we must involve them in shaping the policies and procedures that will affect the families who will follow in their footsteps,” she added.

The National Donor Family Council is dedicated to enhancing the sensitivity and effectiveness of the organ and tissue procurement process; providing opportunities for families to grieve and grow; and utilizing the unique perspective and experience of these families to increase organ and tissue donation. The NDFC offers educational materials for organ and tissue donor families. Its newest resource for tissue donor families, “Your Loved One’s Gifts Make a Difference”, is now available. For a copy of the brochure, the Position Statement on Tissue Donation, the Informed Consent Policy for Tissue Donation, or other information, contact the National Kidney Foundation at (800) 622-9010.

Position Statement on Tissue Donation

Informed Consent Policy for Tissue Donation